How CRPS Turned Me into a Crusader

Editor’s Note: Gracie and I met through social media (you will see that she uses social media a lot and very successfully). She has CRPS, but you’ll find she’s much more than just that. We have had a couple of conversations and we at the National Pain Report believe she is a voice you may find interesting and inspiring. She is going to write for us occasionally, starting now.

The Gracie Story (the short version)

Like so many CRPS sufferers, it started innocently.

Ten years ago, when I was 32 I had a hysterectomy. I started putting on weight – 50 pounds to be exact and that’s a lot of weight, especially when you’re 5-foot-4 inches tall.

I decided to do something about it. I was working as an electrical engineer for John Deere in Iowa, so I’m wired to find solutions.

I found a personal trainer and pretty soon found out that one thing I really liked to do was kick boxing. So for the next two and a half years – I kick boxed myself back into shape.

About a year and a half into my new regimen, my left wrist and arm started to hurt – I thought it was a soft tissue injury so I just fought through the pain.

I shouldn’t have.

For a year I ignored what my body was telling me. I kept boxing.

In 2009, I had to have surgery on my left arm.

It went well.

The surgery and rehab was very painful, but I told my surgeon, I didn’t want any narcotic pain medication – “I’m terrified of them”.

He prescribed me some oxycodone and told me I’d need them for four weeks. I was off them in three days.

Then I had the surgery on the right hand.

When the anesthesiologist gave me the shot before the surgery – it felt different and not in a good way. I feared then something was wrong.

I would have no idea how wrong.

After the surgery, rather than 3 days, I took the oxycodone for 5 weeks. And I wasn’t getting better. The pain was indescribable (unless you allow cursing). And more importantly, I wasn’t getting any answers.

When an occupational therapist first uttered the words, “complex regional pain syndrome”, I didn’t know what it was, but I was determined to find out. I needed to learn everything about it, because I was determined to beat it.

And in my journey, which I’ll be sharing with you in the coming weeks, something else happened.

When it started I started looking for information and writing a journal about what I was finding. If you have CRPS or any other chronic pain malady, you know that you often feel alone. It is terrible.

I started to share information with people that I began to find on social media.

I really began to see this as a calling as I realized several years ago that my advice was gaining momentum among other people – mostly who live here in the Midwest – so I went from information gatherer and sharer (is that word?) to a full throated advocate, which is where I am today.

There are probably 75 different Facebook communities that I’m actively engaged in from CRPS (of course) to treatment and resistant mood disorders, to chronic pain maladies to depression.

I’m a bit of a missionary, actively sharing information, encouraging people to talk and communicate with each other and with their doctors.

“Help them help you”, I like to say.

Well enough of me for now. I just wanted to introduce myself to you.

(By the way, on Facebook I’m known as Gracie Gean)

Talk with you again very soon.

In the meantime, let us know about your CRPS or other chronic pain experiences!

Editor’s Note: Gracie will be writing on some specific topics from her experiences and ideas that come from her colleagues on Facebook and maybe from you!

When will these doctors realize that untreated and undertreated acute pain becomes chronic and undertreated and untreated chronic pain becomes central intractable pain?

I was poorly treated for almost 2 decades because I was 2 or younger when my chronic pain started. After some untreated acute pain episodes/incidents, my chronic pain became severe in my teens. I was treated alright for about 15 months, but then I ewent back to undertreatement and I spiraled. I didn’t get CRPS, which I like to think of as the sister of CPS, instead my pain became centralized. Although they aren’t identical, CRPS affects the peripheral nervous system [PNS] and Central Pain Syndrome [CPS] affects the central nervous system [CNS]. To complicate things, I have a diffuse intrinsic pontine glioma and Medicaid. I can’t get a PM and my PCP has me on half of my old regimen that just barely contained my pain before it got even worse. The longer they wait, the worse it gets for me. At this point, no dose of Duragesic or oral opioids will be able to get the CPS under control. Thankfully, I did learn on June 24, 2011 that an intrathecal pain pump could eliminate my pain will 2-3mg/day of morphine (instead of 300mcg/hr Duragesic). For a combination of reasons, including Medicaid payment levels, I am still trying to get a pump. My biggest problem is that I’m undertreated, but still on high dose opioids because I need ultra-high dose opioids or intrathecal opioids.

Many of the things listed in this article ring true to me, such as beign afraid to take opioids and taking less than I should have. I thank you for your crusading because I know how hard it is just to keep living with IP (intractable pain, which includes all CPRS and CPS patients) and adding crusading on top of that is truly heroic.

When will these doctors realize that untreated and undertreated acute pain becomes chronic and undertreated and untreated chronic pain becomes central intractable pain?

I was poorly treated for almost 2 decades because I was 2 or younger when my chronic pain started. After some untreated acute pain episodes/incidents, my chronic pain became severe in my teens. I was treated alright for about 15 months, but then I ewent back to undertreatement and I spiraled. I didn’t get CRPS, which I like to think of as the sister of CPS, instead my pain became centralized. Although they aren’t identical, CRPS affects the peripheral nervous system [PNS] and Central Pain Syndrome [CPS] affects the central nervous system [CNS]. To complicate things, I have a diffuse intrinsic pontine glioma and Medicaid. I can’t get a PM and my PCP has me on half of my old regimen that just barely contained my pain before it got even worse. The longer they wait, the worse it gets for me. At this point, no dose of Duragesic or oral opioids will be able to get the CPS under control. Thankfully, I did learn on June 24, 2011 that an intrathecal pain pump could eliminate my pain will 2-3mg/day of morphine (instead of 300mcg/hr Duragesic). For a combination of reasons, including Medicaid payment levels, I am still trying to get a pump. My biggest problem is that I’m undertreated, but still on high dose opioids because I need ultra-high dose opioids or intrathecal opioids.

Many of the things listed in this article ring true to me, such as beign afraid to take opioids and taking less than I should have. I thank you for your crusading because I know how hard it is just to keep living with IP (intractable pain, which includes all CPRS and CPS patients) and adding crusading on top of that is truly heroic.

Gracie, Dr. Biro wrote that a s long as the conversation lasts, people in pain are not alone. You have done a great deal to make sure that there is an ongoing conversation for people in pain and you have enlarged their voices. Thanks to you, people with CRPS feel less alone and they are less alone.
I hope you will continue your efforts and that you will broaden and deepen your understanding of the experience of pain in all its aspects.

I am a grateful recipient of Gracie Gean’s support and knowledge! This article is great and I look forward to hearing from her again! I have CRPS and EDS and they have robbed me from my life as I lived before and wish to continue to live! It is a lonely disease! Gracie Gean’s efforts and compassion have helped me! Her FB site has been a blessing! Thank you Gracie Gean!

I am so thankful for people like you Gracie! I have seen the video about your treatment protocol and am delighted that CRPS is being treated in innovative ways. Your efforts to raise awareness and build community are very valuable. Thank you for taking the initiative and I look forward to reading your articles!

Gracie is an amazing person and such an inspiration! I will never forget the first time I messaged Gracie for help. I had been following her crusade on Facebook for awhile but it wasn’t until I was at my worst that I had finally gotten up the courage to message her. I’m sure the courage part seems silly but when you have lost (literally) all your friends and have had people talk negatively about you because of this horrible disease, it becomes hard to believe that someone actually wants to listen. So I finally messaged her and told her briefly about my fight with CRPS and asked some questions. I was blown away by how quickly she was on the phone calling me! Gracie went above and beyond to answer my questions and made me feel like there was hope again! It brought tears to my eyes to know that I mattered to her, that someone who was a complete stranger actually cared about me! That’s what makes Gracie Gean an amazing advocate for CRPS! Thank you Gracie!